Hi all, I have a 12 yr old daughter with CF, her father lives in another state and she goes to visit about twice a year. Here is my situation, the past few times she has visited him she has come home with way to much medication, which tells me that treatments do not get done on a daily basis. This past summer she went to visit him for 45 days, I was only able to send her out with 30 days of medication, which I told him, I also told him he would have to have her meds transferred because she would need them refilled before she came home. He did not have them refilled, he called about 10 days before she was due home because he ran out of her pulmozyne and needed help with the refill. Which in itself was a different situation. She supposedly went two days without this medicine because he waited so long to refill. So, here's what she came home with. 16 vitamins, all of her zithormax that I sent, her antacid, and her hypersaline. All of these meds should have been transferred and refilled, they came home in the same bottles, so when I refilled her I asked the pharmacy which meds I needed to transfer back and like I knew just the pulmozyne. Of course I wanted to discuss this with him, but he has been ignoring my calls and he fb me to ask what I needed, so I told him I needed his new address so I could send him some info on CF and that we needed to talk about her missed meds. His reply. "I'm not tracking any missed meds on my end." In response I gave in the facts of what she missed and explained the importance of him being responsible when it comes to treatment, I also told him that I understand that this can be overwhelming, but he needs to look past that or she may not have the future we want. I have received no response from him and it has been three days. I'm not sure what I should do, he wants her for xmas this year, but if he can't talk with about this, than I can't send her to him. I'm just no comfortable with it, she needs all her meds for this to work the best. Any advice on how I should handle this?
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Advice on talking to father of the importance of getting treatments done.
- Thread starter jello5675
- Start date
Has he been involved with any of your child's CF care at all? Kind of difficult if he's not responding to your inquiries, but I guess if he really wants her for Christmas, that he's going to need to be responsible. The other thing is your daughter is getting old enough to be responsible for her meds. My 10-year-old knows how to run his vest and nebulizer. Isn't proficient loading up his nebulizers, but knows the difference between pulmozyme and tobi, knows to take his enzymes and can identify most of his oral meds and when to take them.
This is a legal issue. If you think that he is interfering with her taking her medications, you may want to revisit his visitation rights. The court will not look favorably upon his putting her health at risk.
A letter from your lawyer, putting ex on notice, may be sufficient.
A letter from your lawyer, putting ex on notice, may be sufficient.
Ratatosk;bt470 said:Has he been involved with any of your child's CF care at all? Kind of difficult if he's not responding to your inquiries, but I guess if he really wants her for Christmas, that he's going to need to be responsible. The other thing is your daughter is getting old enough to be responsible for her meds. My 10-year-old knows how to run his vest and nebulizer. Isn't proficient loading up his nebulizers, but knows the difference between pulmozyme and tobi, knows to take his enzymes and can identify most of his oral meds and when to take them.
He was involved at first when we lived in the same city, but even back then he still had a hard time with it, which is normal, but I think he lets that interfere with ability. Every time we would leave a clinic he would say negative things about her CF team, how they talked down to him and so on. One time we went to a clinic and he told the dietician that he was concerned our five month old was overweight because she had rolls on her legs. She only in the 50th percentile on the BMI chart. Not overweight. She was speechless for a moment. Then she replied that if she ever had a CF patient that was overweight she would be thrilled. So this is what I deal with. Shortly after that we split and I just couldn't handle the negativity, so I started scheduling clinics when he couldn't be there. Perhaps this is wrong of me, and perhaps this contributes to the current situation, but I always keep him up to date on clinic information. I send him new information as I receive it, I suggest websites and other social media sites that may help him get a better understanding, but he takes it as if I'm talking down to him and I'm better than him when it comes to her medication management. Well I am, I believe that a key factor to her being healthy starts at home and how we strive everyday to get all treatments and medication done.
Yes she is old enough to start learning her meds, she know which medication goes in what neb cup, she knows the order in which she does her medication, she knows that she needs to take pills before she eats anything and the clinic and I are starting to work with her on knowing which medications gets taken when, and also why and what they do to keep her healthy. Every trip she makes to her dad I send a detailed chart of oral medications, breathing and vest treatments. I email him a copy and I print of copies to put in her med bag. Thinking he can just take it out, put it on the fridge, and learn together, but I always get the hard copy back, right in the same place I put it. I feel I need to make this point too, Maddy is at the age where she needs to start learning her own med management, I'm not always going to be there, but she also wants her parents to be involved with her treatments, not just say, "go do you treatments go take your meds, why didn't you grab your pills before we left the house." Why can't he see that. This is what he said to me in response, "The mistake that we made was, not sitting down and either watching her take her meds or force feeding them to her, to include the procedures." No joke, copied right from the email.
Yes she is healthy now, no she hasn't had a hospital visit since she was born, I thank god everyday for that, but I am very honest with the clinics about missed, and I am very diligent when it comes to her med routine. Never once has he ever thanked me for helping keeping healthy, he thinks that her 3500 to 4000 calorie intake is excessive. How do I help him understand. I send out enough Scandi shakes for her visit, one for each day, I get 2/3 back.
Any suggestions, I will once again send him more info, and reassure him that I am working with her, but I just feel like he has treated her CF as burden, instead of embracing it. She told me that she missed treatments every Sunday night because they were driving back to his other house, 2 hours away. 6 weeks, 6 Sunday nights no meds. Whereas, would of ensure treats were done before hitting the road.
Thanks for letting me babble, now I have to respond to him, and ensure him that she won't be visiting this xmas, but he is more than welcome to come visit her.
Printer;bt471 said:This is a legal issue. If you think that he is interfering with her taking her medications, you may want to revisit his visitation rights. The court will not look favorably upon his putting her health at risk.
A letter from your lawyer, putting ex on notice, may be sufficient.
Well, I was hoping to wait to use that one. I already spoke with her clinic about the situation, which they were not happy about, and the social worker if needed we can use medical neglect. I really want to wait for that, I'm hoping he will just realize he is in the wrong and start to do a better job, but he is pretty stubborn, and feels he is never wrong. He made sure to remind me that he donates to the CF Foundation every year, and he has a best friend with CF who is 38, and she is doing well. I wonder if he realizes that Maddy should never meet his 38 yr old CF friend because they could transfer superbugs to each other. Hopefully she realizes that.
Thanks for the encouraging words, sometime he makes me feel like I'm over emotional when it comes to this business. I really appreciate all the support.
azdesertrat
New member
If your ex is not going to oversee your daughter to make sure she gets her meds, she doesn't need to go to his house for any length of time.
The dereliction of his duty to be a FATHER & make sure his daughter stays healthy is a very serious problem.
As far as I'm concerned, it's child abuse.
I agree, time for a lawyer. You need full custody with your ex being entitled to visit his daughter at your home. If he can't be responsible, that's just the way it is.
There's my advice & it's probably worth every penny you paid for it.
Best of luck to you & your daughter, I hope you can get this worked out for her sake.
The dereliction of his duty to be a FATHER & make sure his daughter stays healthy is a very serious problem.
As far as I'm concerned, it's child abuse.
I agree, time for a lawyer. You need full custody with your ex being entitled to visit his daughter at your home. If he can't be responsible, that's just the way it is.
There's my advice & it's probably worth every penny you paid for it.
Best of luck to you & your daughter, I hope you can get this worked out for her sake.
lol, thanks pat. Our custody situation is a bit different. There are no set days, he's in the military and custody says "as agreed upon" He lives in another state, thank god. I know she only visits a few times a years, but in my opinion missing treatments like she does a few times a year will only catch up to her in the long run. I have informed the clinic and the next step is contacting CPS for medical neglect. I tried not to be condescending with him, but it's difficult when in one paragraph you take responsibility and in the next you blame her for not being more responsible. Just frustrating, we have lived in michi8gan for 8 years now and not once has he visited her here. Michigan doesn't have what texas has, etc, etc., at the end of my last message I told him, "perhaps this is the year to come to her." I know he won't like it, but o f'n well. Sorry about the curse word.
G
Guest
Guest
You know you can contact the military. What he is doing is wrong. I was born and raised in the military then joined. That will get his attention quick. Otherwise get a lawyer. The more you
are proactive with her health now the better she is down the road. It takes just one nasty bug or illness to do damage. All her med taking and vesting needs to become habit so that
she does not ever give it a second thought. It will be her normal and not his.
are proactive with her health now the better she is down the road. It takes just one nasty bug or illness to do damage. All her med taking and vesting needs to become habit so that
she does not ever give it a second thought. It will be her normal and not his.
Cheryl, thanks for the advice. I thought about contacting the military. And u r so right about being proactive, that is what I believe too, I was just trying too help him understand, but instead of hearing what I'm saying, he reverts back to me being spiteful of him. I'm just so sick of his high and mightinesss. I have nothing to be spiteful for, spiteful he's getting marriedfor third time, nope. But these r things he says to me. Ugh